Autistic Women: Misdiagnosis and the Importance of Getting it Right

If you’re autistic, there’s a good chance you have also been given at least one of the following diagnoses: generalized anxiety disorder (GAD), social anxiety disorder (SAD), ADD/ADHD, obsessive compulsive disorder (OCD), eating disorder, major depressive disorder (MDD), Tourette’s, bipolar disorder, borderline personality disorder (BPD). Current research suggests that as many as 8 out of 10 autistic individuals have at least one other psychiatric condition–commonly referred to as a comorbid condition.

Are autistic people predisposed to certain psychiatric conditions or are our autistic traits commonly mistaken for symptoms of other conditions? As someone who received a dual diagnosis of anxiety disorder and Asperger’s syndrome, I’ve spent a lot of time thinking about how my anxiety relates to being autistic and whether it is, in fact, disordered.

In talking to other women about their experiences with the mental health system, I discovered that this is a common reaction to a comorbid diagnosis. While mostEdited Call-out-box-logo_6 women on the spectrum feel that their autism diagnosis is a good fit, our relationship with our other mental health labels varies greatly.

Nattily, who received her autism diagnosis at age 25, was diagnosed with several other conditions in high school and college:

   “I was diagnosed with major depression as a teenager when someone told the school I had been self-injuring for a couple years.”

She believes that was a misdiagnosis and says that the mishandled intervention that followed made her skeptical of getting help for other conditions:

“Later, in college, I was diagnosed with anorexia and… bipolar disorder. I disagreed… at first, but I think that’s pretty common. I see now, about six years later, that they are both accurate and that they both require treatment,” she said, adding that the treatment she’s received for both has been on target and helpful.

For other autistic adults, depression and anxiety are seen as side effects of being autistic in a neurotypical world. Carolyn, who in addition to identifying as autistic has been diagnosed with GAD and MDD, says:

“I’ve had symptoms of both since about middle school, and those I feel are related to my neuroatypicality, or at least to my navigating of the world while neuroatypical.”

She goes on to wonder if those symptoms would exist or would be as severe if she wasn’t on the spectrum.

Some professionals have taken the relationship between anxiety, depression and autism a step further. Bartak, Bottroff and Zeitz have proposed a model that suggests anxiety and depression, especially in autistic adults, often result from “ineffectual intervention strategies” used by professionals who fail “to recognize the developmental features and dynamic and functional aspects” of autistic behavior. In other words,[1]  being autistic doesn’t necessarily raise our chances of having anxiety or depression. A more likely risk factor is the use of intervention strategies that don’t take into account the functional aspects of autistic behavior.

Many of the women I talked to for this article agreed that the anxiety or depression diagnoses they’d been given were accurate, but added that those diagnoses alone didn’t tell the whole story. And that’s where comorbid conditions can present a problem for autistic adults.

Misdiagnosis: When Comorbids Take Center Stage

Finally diagnosed at 44 with ASD, Jayne says that during the year and a half it took to make herself understood to mental health professionals:

“a lot of other mental health conditions were put forward. My communication is bad and I was suffering from posttraumatic stress and I had to keep saying, ‘No that’s not right’ until someone mentioned autism and I looked into it and said, ‘That’s it.’ It was a relief.”

Like many late-diagnosed women, she invested a significant amount of energy in advocating for herself as she sought an explanation that fit.

Viewing autism through the lens of a single strong or dominant trait can lead to misdiagnosis. For example, an adult with strong perservative tendencies may be incorrectly diagnosed with OCD. Serious difficulties with executive function can mimic the symptoms of attention disorders (ADD/ADHD). Some adults go through life accumulating an alphabet soup of diagnoses: ADHD, OCD, GAD, SAD, BPD . . . when, in fact, a single correct autism diagnosis would better account for most of their symptoms.

If a clinician views a comorbid disorder as the primary reason that a patient is seeking help, they might simply stop there, missing other symptoms of autism. Women in particular may be vulnerable to misdiagnosis because autism is assumed to be less common in females. When a  clinician subscribes to the myth that autism is an unlikely explanation for a female patient’s difficulties, he or she may reflexively look to other conditions first for a more likely answer.

A woman who reports feeling sad and lifeless due to autism-related difficulties with maintaining relationships may be diagnosed with major depression. The same is true of a person who rarely leaves the house, has few social supports, or lacks interest in social activities. Clinicians can look at these atypical behaviors and see them as signs of depression rather than autistic traits. While treatment for depression may be warranted, treating an autistic person only for depression without also providing help for building coping skills will likely result in frustration for both the patient and the clinician.

The same is true of anxiety disorders, especially social anxiety disorder or social phobia, which are commonly diagnosed in autistic women, either alongside or in place of autism. Some clinicians fail to differentiate between the irrational social anxiety that fits the definition of a separate disorder and the rational fear of social interaction that occurs when a person struggles to read body language, make small talk or follow a conversation in a noisy room.

As Emily puts it:

“While I do have social anxiety, I do not have the disorder. If every time you try to do something, you mess it up, you start to get pretty frustrated and you might want to give up. But I can’t give up on social interaction – you have to interact competently with people to be an adult in our society. So stakes are pretty high on me pulling it off, but I’m very bad at it. The combination of high stakes on something I’m very bad at is what causes my anxiety – just like someone who’s bad at math but needs to pass their exam to get into a program or job they want would get anxious over that exam. Except my exams are all day, every day.”

The distinction between justifiable social anxiety and a social anxiety disorder is important. For many autistic adults, it may be the difference between the road to self-acceptance and reasonable accommodations or years of self-defeating therapy to fix a disorder that doesn’t exist.

The Importance of Accurate Diagnosis

Inaccurate diagnosis can have life-altering consequences. Helena, who was diagnosed with BPD as a young woman, spent a year and a half in the youth ward of a psychiatric hospital. She described many aspects of her care as helpful, particularly the highly structured nature of the program, the emphasis on daily physical exercise and the many opportunities for social interaction. However, she also sees the lost opportunity in her misdiagnosis:

“I think they were misinterpreting everything I did and assigned me motivations I didn’t have . .  . Possibly that partly explains why the treatment was quite ineffective and why I stayed so long and they didn’t know what to do with me.”

Bartak and his colleagues believe that this type of diagnostic confusion sets the stage for misdiagnosis, particularly in autistic individuals with comorbid psychiatric syndromes.

After being diagnosed with autism in her early forties, Helena now believes that what her doctors described as “BPD emotional instability” was actually autistic meltdowns due to social stress and the stress of living in an institutional setting. With a more accurate assessment perhaps her treatment would have been more effective, shortening her time spent in care.

“The problem solving focus was not on the right areas,” she says. “What the focus should have been: help to develop independent living skills / executive function skills and social skills, because those were my core problems.”

[1] p. 249-250 in “Stress and Coping in Autism”

About the Author: Cynthia Kim is the proud owner of many labels including woman, wife, mother, writer, editor, entrepreneur and most recently, autistic. Diagnosed with Asperger’s in her early forties, she began blogging about life on the spectrum at Musings of an Aspie. She is the author of “I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults” and  is a regular contributor to Autism Parenting Magazine. When she’s not writing about all things autism, she indulges her passion for words by running a small publishing company and occasionally dabbling in fiction, which sometimes gets published.